We're both super busy at the moment. Working on Lilian's therapies (good progress), keeping up with Oskar and trying to run a household. It's hard work! Here's some snaps of the two monkies having a laugh together last week.

Monday, 8 October 2012

Back when the London Olympics were about to start Lilian was asked to get involved in a challenge set by Guy's and St Thomas' NHS Foundation Trust to promote Speech and Language Therapies (SLT). Lililan's SLT therapist Lisa Pitts was involved in the organising and decided a torch relay between various children centres such as nurseries and clinics would be appropriate. Lilian had to take the torch from her nursery to a local primary school.

She and Mette had a great time. They even made it to a newsletter produced by the Royal College of Speech and Language Therapists! Two photos to boot. Cool.

Sunday, 29 July 2012

Lilian had her 4th MRI scan in April to check if her hydrocephalus and Chiari malformation has gotten any worse. The scan went well and it showed that its not progressing and no intervention is needed.

Children with Costello Syndrome often likes to play tricks on the doctors and its not straight forward to give them anaesthetic. We gave our hospital Lilian's notes from her previous anaesthetics and it all went quite smoothly. We had a bed on the ward after the scan but lilian was doing so well and she was sent home the same day.. way to go lilian..

Sunday, 15 April 2012

I have been intending to write an update on Lilian’s feeding progress for a long time but have been so busy and wasn't really sure where to start. It's been a bit of a roller coaster with loads of highs and lows but overall we are making progress. Initially Lilian was bottle/breastfed and she seemed to enjoy feeding. As she was so small from being three months premature she was never able to take enough volume and needed the tube to supplement her. With time she became tube dependent and stopped eating completely. She vomited multiple times a day and became oral aversive and would cry when seeing the bottle or being exposed to wet textures. We worked very hard with our OT and SLT on the sensory issues and eventually Lilian started to enjoy playing and touching food. This was done by firstly introducing wet or sticky toys as part of her play and then moving onto messy food play.

Lilian 5 months - enjoying her bottle

Lilian having some milk via the tube

We came to the point were Lilian loved food and would taste (lick) it but not eat anything. If
you saw her in a restaurant you'd probably think she was a typical child just not a very hungry one. We decided to get help from the Graz net coaching
team as we felt a bit stuck on what to do next. We started the programme and we knew we had a long journey ahead of us. Lilian was
100% tube fed with nearly no oral skills. But we struggled with the
net coaching programme. Every time we made progress Lilian became ill and we then
had to start all over again. We felt a more intensive and hands on programme was
needed to help us move on. The main problem we had was that Lilian insisted on
feeding herself but she wasn't able to take enough volume. Lilian was also not drinking anything and for us to move forward we needed her
to allow us to feed her. The hardest thing is that you cant put any pressure on
Lilian because if you do you take 10 steps backwards. It has to be fun and she has to
feel in control

The Graz net coaching team recommend we held play picnics as part of the food therapy program. Kids can do what they want with food. No intervention is allowed from parents. It's all about fun and exploring the different tastes and textures with no pressure on eating. If possible you should invite eating children to the picnic and serve the food on colourful dolls plates etc.

Another play picnic - no friends around so invited teddy

Lilian's
friend Anabelle having fun at the play picnic

Lilian enjoying pretending to eat

Lilian licking / tasting her food

Lilian eating with her spoon

Deciding to go to Graz was one of the best things we have done.
I don’t think people know how stressful and isolating it can be when you have a
child that won’t eat. Eating is just one part of it but the worst thing for us
was the tube feeding and constant vomiting that comes with it. For example she
would vomit if you gave the milk to quick, she cried, had a cold, got upset,
coughed, moved her around to quickly afterwards, you had to bring spare
coats/hats etc every time you left the house in case she vomited after her
feeds.

When we left Graz Lilian was still partly tube fed but we could
now feed Lilian with a syringe and she would also open her mouth for food. Lilian opening her mouth for food was the best
feeling ever. I had been working on this at home for months and she always
turned her head when I attempted to offer her the spoon. The vomiting had also stopped by the reduction
in the milk given via the tube. This meant more sleep for mummy and daddy no
waking up a night and having to change the bed sheets because Lilian vomited
during her feeds. Note: She is
still fed on a machine overnight but we have reduced the volume
and also mixing her formula with water.

When we came back from Graz Lilian would allow us to feed
her when we went out to restaurants and family dinners (not at home). MDS at Graz
thought the reason for this were that Lilian had a lot of memories about eating
and went into her old ways when at home. So in the early days we took Lilian to
coffee shops and cafeterias almost daily. I think Lilian watching other people
eat plus the distraction of other people around her helped to encourage Lilian’s
eating. Luckily we live in London and have everything on our door step. Also had my mum staying to help us out.

About 3 weeks after coming back from Graz Lilian
suddenly allowed us to feed her all the time regardless of where we were. She
would open her mouth at each mealtime and just eat and eat. Her oral skills
were still poor and most of the food came back out again but she was
getting loads of practise. We were so happy and excited.

Unfortunately a couple of days later she caught a vomiting bug (we all
had it) it took Lilian a very long time to get over it. She couldn’t keep any
food in her (including water) and we worked with our dietitian on finding some
milk she could tolerate. We were back to a 100 % tube fed child with zero
oral intake and vomiting all the day long. We had to take two trips to A&E due to
worries about dehydration. I know from the Costello support group that children
find it very hard to recover from these sorts of bugs and it takes a long time
to get back to normal. It took a couple of weeks to get her to tolerate her
milk. By then she had lost a lot of weight and we needed to get her weight
back up before reducing the milk again.

When we eventually reduced Lilian's milk the interest in food did not increase and we missed the hands on
therapy we had in Graz. After about 3 weeks of having decreased Lilian's milk I
was about to give up and decided to increase her milk intake again to up her
weight and also her energy levels so we could crack on with her physio. I was
at a stage where I just had enough of spending so much time and effort on the
feeding. So I offered her food when feeding Oskar and didn't worry too much
about it. If she didn’t eat anything I would just
give her a bit more with the tube. If she did eat something then I wouldn’t.
Then for about 2 weeks ago she suddenly started to wanting to get fed again. See the video below

The next step is for Lilian to improve her oral skills to
allow her to take more volume so we can reduce the tubefeeds even more and also get her to handle different textures and tastes. We are working with Graz, local SLT and dietitian on these steps. I will
try and write a separate post on this topic. We are also far off from getting
her to drink anything due to she wants to hold the cup herself and doesn’t
bring it to the mouth if there is anything in the cup. More to follow.

A lot of people have asked me if I recommend going to the
Graz notube clinic. It all depends on your child. We were lucky in a way that
Lilian is in good health and have no other medical issues apart from the
challenges that Costello Syndrome brings. What surprised me the most is that Lilian
was 100% tube fed for about 14 months and since starting to take food orally
she never had any problems with swallowing. Her problem seems to be lack of
practice and good oral skills. So going to Graz was the best thing we did for Lilian
and for us. I am sure she would have started to eat if we didn’t go to Graz
as well but Graz just helped us fast-forward the process. If you haven’t got the
time or money to go to Graz there are still loads of things you can do at home.
The
parents support group named tube fed kids deserve to eat was a great resource
to me and you can find lots of advice from other parents

We always include Lilian in our mealtimes

Lilian's danish cousins showing how to eat cheese puffs. They are perfect role models and very keen to show her how its done

Dummy full of cream yum yum

Eating is fun

We have been working on getting Lilian to close her mouth. Licorice did the trick as seen on the photo

A big thank you to Lilian's brother Oskar who is the perfect role model for Lilian. They are both partners in crime when it comes to throwing spoons / food on the floor. A big thank you to grandma (mormor) who has spent many weeks working with Lilian on her feeding and making up all sorts of food for her to try.

Lilian licking her sweets while standing in her standing frame. she is female after all and very good at multi tasking..

Tuesday, 3 April 2012

Sorry everyone. We've been very lackadaisical about updating the blog for the last few weeks. We're both as busy as ever and it just fell to the side a bit.

We've had some lovely comments from people so thought it'd be nice to put up a guestbook page for all to see. The link is on the left. So go on and say something.

Lots has been going on. Lilian's feeding and physio are coming on great guns. Yesterday Mette said Lilian is eating more than Oskar as some mealtimes! Her new private physio is really impressed with her. All the exercises Lilian has been precrisbed are definitley doing the trick. Mette is going back to work soon so we're busy trying to work out child care, nannies and nursery! Headache.

More detailed posts about all the good and bad stuff will follow shortly...I promise.

Wednesday, 11 January 2012

We took Lilian to her new physio today. This is the place that Eva from the Austrian feeding clinic recommended to us. It's called Kiki's Children's Clinic and is about 10 minutes drive away in Clapham.

Lilian is still very behind with her mobility. She can roll from front to back and walk if aided by one of us. She has strong legs and a good grip but her shoulders and arms are weak. She never went through the tummy time period because the tummy tube hurt her so she stayed on her back. This has led to Lilian not learning how to get from lying to sitting and then onto standing.

The aim of the clinic is to get her physio therapy into a higher gear by going a least once a week. At the minute she has a home visit once a month from the NHS. It's not cheap but we're get cover by my work health insurance which is great.

Monday, 9 January 2012

Lilian went to see the Chiropractor at hospital today. Because Lilian isn't so mobile (yet) she tends to have weak tummy muscles which can mean she leans too much. They did X-rays and all sorts of other tests. The result of the check-up was positive. She does have a slight curve but it's not very bad and can be corrected with exercise and time. Plus as Lilian becomes more mobile it'll build muscles which in turn will improve her posture.

Sunday, 8 January 2012

Lilian had her second birthday this Sunday the 8th. She happens to share the day with Mr David Bowie (my hero) and some old rockabilly fella called Evlis.

A Danish cake made by Mor mor and a chocolate number whipped up by Daddy.

We spent the day at Lilian's Grandparents house. Her Autine Hannah cooked a delicious roast for lunch. All the family came over and it was lovely. Lilian ate loads of food in her own way. Got loads of lovely pressies and was happily tired when we got home again.